Proposal From Italy: An International Collection of Recovery Stories

Here is a new proposal from Italy: We want to start an international initiative to promote the writing of recovery stories in every country, with the ultimate goal of sharing at an international level the most compelling ones from each country. Our proposal is born from an awareness that recovery stories are necessary today in order to give back to mental sufferance its meaning and transparency, to fight the biographical opacity of biological theories (the broken brain) and to guarantee decisional power to those who are offered (or imposed) mono-dimensional or dehumanizing treatments.

For me, personally, my interest in the writing of such stories came about from my reading just such a story more than a decade. The book, The Day the Voices Stopped. A Memoir of Madness and Hope, was written by Ken Steele. He was a person who regained a full life and clarity of mind after suffering for 30 years from hallucinations that persecuted him and often made him suicidal. He dedicated the last years of his life to protecting the civil and political rights of people who are said to be “mentally ill.” One of the campaigns that he promoted was named “I vote, I count,” aimed at facilitating access to voting for those who spent most of their lives inside psychiatric institutions.

Ken Steele’s book was so warm and convincing, and so clearly showed that recovery was possible (if the person was put in the condition of sharing transparent proposals for shared decision making), that it was an easy choice for me to translate it into Italian and look for a publisher willing to print it. In September 2005 the Italian edition of the book was ready. The first public launch took place in Biella, and it was there that the idea of promoting a national event that would encourage our «Italian Ken Steeles» to tell their “recovery stories” was conceived. It took about two years for this idea to become a well-defined project: the national Literary Contest “Storie di Guarigione.” Its first edition ended in Autumn 2008, with an award ceremony for the 12 winners (among 600 participants).

As we’d partly anticipated, the Literary Contest “Storie di Guarigione” was supported by a specific network: the health and social agencies co-ordinated by the Department of Mental Health Care of Biella. Under the direction of Dr. Emanuele Lomonaco, this Department promoted the creation of a “round table” comprising all the stakeholders locally involved in mental health projects. This round table chose the name of “The Community That Heals” to express, in a direct manner, that it is the responsibility of the community to provide the resources required for exiting mental sufferance and the role of the “sick person.”

Beyond the specific features of the local community network that undertook this initiative, the Literary Contest represented an attempt to clearly translate two priorities:

The centrality of the point of view of the patient, which users’ movements have been claiming at an international level since many years and which, in Italy, collides—silently—with the prevailing tradition of “democratic paternalism.” Due to the historical reach of the decision by psychiatry to close Italy’s mental hospitals, this Italian version of paternalism can be described in this way: “There is no need to ask you, the patient, what is best for you. Since I, the psychiatrist, supported the shutting of the hospitals and that reform, I am a “democratic professional, and thus I already known what is best for you and can decide on my own!”

The recovery of the comprehensibility of the psychotic experience, an idea that has gradually been lost in Italy, since the early ’90s. It has been squashed, on the one side, by the biological literature on mental sufferance, which has been uncritically embodied by the training schools at universities and, on the other side, by the prevailing attention toward the different organizational strategies for outpatient care. In both training contexts (university and mental health departments), the phenomenological- and psychodynamic-culture on which the patient relationship rested (during the early years following the reform) has been systematically weakened and marginalized.

The subject of the “comprehensibility of the psychotic experience” (the same as for the depressive- and bipolar-experience) is a crucial premise for both the reading and drafting of autobiographical accounts. Many survivors of the psychotic experience define recovery as the capacity of taking back the reins of their existence into their own hands. Some aspects, such as the disappearance of symptoms, quitting meds for good, and the richness of the person’s social network, are just details when compared with the dimensions of ownership of self-consciousness and personal decision-making. Autobiographical accounts usually recognize the positive contributions provided by some mental health workers that offered them real interpersonal relations, but their role always appears as secondary in relation to the personal capacity of turning the page over, after having re-read with pain, curiosity and carefully the negative experiences of the previous pages (in his or her life.)

Not wanting to limit the forms of expression of those who have had “lived experience,” the organizers of the first and second edition of the Literary Contest have invited three types of written works: autobiographies, stories and poetry. All of the coordinating staff (including the webmaster) are “experts by experience.” The submitted writings are first selected by a Jury of Readers (composed of health workers and social workers, as well as people from civilian society, including some survivors) and, after that, reassessed by a Final Jury—in the past, its Honorary Presidents were Alda Merini and Michelangelo Pistoletto. This Jury selected the writings they deemed to be the best. All the winners were invited to Biella for the award ceremony, at the expenses of the Organizing Committee, and received a cash-prize.

The second edition of this literary contests started one year ago: more than 300 participants sent their writings by the end of March, 2014 and on November 28th, 2014, the award ceremony will be held in Biella. All relevant information about this second edition is availableat this website: www.storiediguarigione.net.

We are hoping that others will seek to develop similar initiatives in their countries. Anyone who is interested in doing so can get in touch with us. (Giuseppe Tibaldi [email protected] and Tristano Ajmone, [email protected].) This would be a shared project, and our plan would be to apply for national and international funding. And our ultimate goal would be to publish an anthology of recovery stories from around the world.

Evidence-Based Hope: An Italian psychiatrist, Giuseppe Tibaldi writes about “personal” accounts of recovery, gathered over the last decade. He is launching an international initiative for gathering such studies, which he notes should be considered an essential part of the “evidence base” providing “reasonable hope” to people struggling with psychiatric difficulties.

What is your motivation for this initiative? I would be very skeptical of any international initiative to create and promote survivor stories if it was launched by a psychiatrist such as yourself or a team of psychiatrists, or worse yet, representatives of Big Pharma. Can you understand why? Our voices and the voices of our loved ones have been silenced for decades. Stories about individuals who recovered despite forced medication, stories involving people who successfully got off all of their meds, stories about people who became emancipated from psychiatry altogether, are already available if you know where to look! Check out : http://www.igotbetter.org/

If psychiatry decides to (belatedly) promote stories by psychiatric survivors, it will be to counter the overwhelming evidence that medications are harming people more than they are helping people. Big Pharma already provides ‘fellowships’ to authors who want to share their ‘recovery stories’ as long as the ‘recovery stories’ are in alignment with psychiatry’s myths and lies and help sell more and more medications.

I suggest you consider whom Dr Tibaldi is collaborating with on this initiative; another MIA blogger, Tristano Ajmone, whose bio on MIA reads: “Tristano Ajmone is a libertarian psychiatric survivor, much influenced by Thomas Szasz’s writings and friendship. Tristano doesn’t believe in the existence of mental illness, drug addictions, nor the mind, but rather in individual autonomy, liberty and freedom, and that psychiatric coercion is a crime and a political issue, not a medical one.”

I like this idea as it means at least some voices will be heard, and perhaps by focusing on those who have ‘recovered’ some lessons can be learned.

Maybe another project could work on the stories of people who were not as fortunate to recover. Might just be me but I like to consider the not so happy endings too. Or should horror stories that don’t have happy endings not be heard?

I’m reminded of Ice T who said “I’d like to live where the cops come and get your cat outta the tree, and people die of old age, but I come from South Central Los Angeles and s&%$ ain’t like that, it’s real….. up.

So yeah, I like to read recovery stories, but I’m not going to forget those who didn’t make it.

If the goal of your project is to educate providers about the importance and central role of of self empowerment of the consumer to his/her recovery, then why are the panelists who are judging the stories mostly comprised mainly of social workers, and mental health workers? Isn’t that is illogical? If you have 600 story entries and you want to select only 12 for publication, why not let the consumers and survivors decide which stories get published. The motto of the disability rights movement is “Nothing about us without us”. Your project would make more sense to me if your project lived by its own precepts.

I have very mixed feelings about this kind of thing, some pro, some con. I see it as a good idea, but a good idea that can be used in absolutely wrong ways. I worry, for starters, about the people who might be excluded from any such endeavor, and the reasons why this exclusion might take place. I also worry about who may be included, and the reasons for such inclusion. I don’t think, for one second, that it all boils down to literary merit. We’ve got Peer Support Specialists, for example, at this very moment, who are advancing in their careers through bringing psychiatric drugs to other patient/consumer/users. Psychiatric drugs, that you should know, have a potential for doing great harm. I would worry about the inclusion of some folks who responded to such bribery, and I’d worry about the exclusion of some ex-patients who acted against medical advice or were non-compliant.

When you write a book of “recovery” narratives you are making a presumption, and that presumption is that everybody who was in the system, who would be interested in writing about their experience, has suffered from some kind of “mental disorder”, “breakdown”, etc. (We don’t have ‘the presumption of innocence’ at civil commitment hearings that we have in the criminal justice court process. What we do have is the presumption of “sickness”.) The criminal justice system has been shown to make mistakes all the time, These mistakes take a chunk out of a person’s life, but the nature of this “recovery” is something entirely different than “recovery”, say, from “criminal”, or even “unsavory”, behavior. Some people have merely suffered from the ill will of the authorities, or their relatives, or what have you. “Recovery”, in fact, the word has been co-opted to such an extent that now it is being used to sell psychiatric drugs, drugs that, if they do anything, have been known to impede such “recovery”.

I’m not saying that such a volume would be a bad thing by any means, I’m just thinking that as with Ken Kesey and One Flew Over The Cuckoo’s Nest, for instance, if his book had been judged on its merits by social workers and mental health professionals, it would perhaps never have seen publication, much less have achieved the classic status it has today, and Kesey was an ex-mental health worker himself. Of course, One Flew Over The Cuckoo’s Nest was fiction. My fear is that many of these “choices” may be even more “fictional”, in impetus and slant, than was his novel due to the less than impartial nature of the judges, and the various insidious conflicts of interest that may be tugging on their respective puppet strings.

Thank you for expressing exactly what I was having great difficulty putting into words. This issue of recovery is emotional for me, having witnessed my adult daughter become physically dependent on harmful, psychiatric medications that block her D-2 receptors, then when she is withdrawing (usually cold turkey) she experiences a dopamine related, iatrogenic rebound effect that psychiatrists glibly use as ‘proof’ of her illness. This is a crazy making trap and it makes me wonder how many stories of ‘recovery’ are simply the stories of people who have made their peace with the low standards of recovery as defined by mainstream treatment providers. Our family does not need yet another story of a celebrity patient who found the ‘right med.’ That story is old. It has been bought and paid for again and again by big Pharma and used to force thousands to conform to an inhumane, unjust system. We need the other stories, the ones that counter the lies and myths and ignite a full scale revolution.

My daughter’s definition of recovery is to simply have her full citizen rights restored; her story is not validated by psychiatrists , therefore her story lacks ‘legitimacy’ and is not likely to get published by a panel of mental health workers.

It is next to impossible to locate resources to help a loved one safely taper off harmful medications Many of us have loved ones who are virtually prevented from experiencing a full recovery due to political and economic factors. Despite the challenges, we, her family, stand in solidarity with our daughter’s right to choose her own pathway to recovery~

She has been civilly committed again and again, always resulting in being locked up and having her civil liberties taken away. This is so antithetical to healing and recovery that I want to scream. She doesn’t identify with her mental health diagnosis and therefore neither do I. The implicit message from the mental health workers is that she must admit that she has a ‘disease’ and moreover, as a condition of her release, she must agree to take medications indefinitely as the cornerstone of her recovery.

To add insult to injury, the largest consumer advocacy organization in the US received 2/3 of its funding from 2006 to 2010 from big pharmaceutical organizations and their website is practically a collection of Pharma ads. This pseudo advocacy has robbed my daughter of authentic advocacy while robbing our family of authentic fellowship with other family members during this ordeal, leading to isolation and despair. This paradigm of mental health care has taken away our hope that the current mental health system will ever offer humane, compassionate alternatives or real choices for our family.

The neuroleptics that she is currently forced to take on a daily basis cause her to be disassociated and cognitively impaired. They also take away her creativity. As someone who identifies with being an artist/musician, her ‘cure’ prevents her from living out her highest hopes and dreams as an artist.

This is the reason I find it very difficult to respond to well intentioned psychiatrists who want to reform the system, by sharing stories of ‘recovery’ while they remain in ‘charge’ and while they conveniently forget that their very profession is itself, in need of ‘recovery’.

When psychiatrists express a desire to ‘listen’ to their patients, they rarely subject themselves or their peers to the same scrutiny and self examination. When someone must agree that they have a ‘disease’ that must be managed by taking harmful medication for the rest of one’s life, one must confront a colossal power imbalance within the psychiatric system and until that is addressed, no ‘reform’ is possible.

Thanks Frank for your tireless efforts and for helping me put a few words down.

I think madmom and Frank B. made excellent comments. But another important point, to me, is the idea that if somehow we just told our stories it would change the system. Hey, the people who run the system that has hurt us and ruined our lives know perfectly well what we have experienced.

And we would be telling our stories to whom? How would we be reaching the general public? How would this change anything? This is very naive at best. As I have become tired of saying, our movement for human rights is not that different from other movements of oppressed people. They didn’t just tell their stories or go to useless conferences run by their oppressors. They were (and are) out on the streets, demanding their rights. Gays and women and black people and disabled people and all the others didn’t, and don’t, just sit around and tell their stories.

Really, people, our movement needs to do some strategic thinking. Myself, the last thing I want is a pat on the head from some shrink, even if he has a charming Italian accent.

And I call on MIA too to publish some articles about real strategy for our movement, not this silly nonsense. There is too much of this stuff. We need some hard thinking about what to do next.

“Revolutionary words have become entertainment…oppressors talking about oppressors…revolutionaries have all gone to the art centers to watch the sufferin of the people being dramatized by the oppressors in their revolutionary works.”
— Mutabaruka
(Reading your post made me think of this quote…)

Yeah it’s about time we get serious. Your post also provides me with a jumping off point for something I’ve been thinking about alot.

MIA is not intended to be an anti-psychiatry forum and we should not expect it to be, as much of its value lies in its diversity of perspectives. MIA provides a crossroads for many schools of thought with perhaps the only thread of unity being around the recognized necessity to break out of standard “mental health” definitions and practices. As such, and by definition, a great portion of the MIA community will not get on an anti-psychiatry bandwagon because it is not in their interest to do so, for varying reasons. On the other hand, the rumblings of the psychiatrized on the site have been growing louder in our calls for the end of forced psychiatry and the medical model. As odd as it seems, these many strands of thought and opinion somehow maintain a relatively cooperative attitude towards one another, most likely because we all value at least the attempt to communicate. So here’s the thing:

I don’t have any intention of attempting to achieve either unanimity or majority support at MIA for an anti-psychiatry position. However I encourage the psychiatrized among us who have a clear anti-psychiatry stance, and our allies, to begin discussions on this site about what we would like a concrete anti-psychiatry organization/network to look like and stand for, what positions and campaigns it would adopt and prioritize, etc. If we spend a few weeks or months engaged in such informal discussions it would be easier if/when we make it to the next step of actually scheduling a meeting somewhere, because we wouldn’t have to start from scratch when people finally did meet.

I encourage those smaller groups of people (it seems there may be several) who may be on the verge of announcing such a meeting (if you in fact exist) to refrain from making any concrete moves towards such in the immediate future, as I believe that there are 20+ people here (at least) who have interest in this. If we have the time to prepare for the eventuality of such an event it would allow for more thorough and democratic discussion of all that is involved, and probably ensure greater participation when we do get together.

It would be great if there were an ongoing blog or something here specifically set aside for discussing the “hows” of such an organization rather than the whether, or the why. But if this is not deemed feasible by the management, we can still carry on the discussion here amongst ourselves. Thoughts, folks?

Hey oldhead, I have to laugh, a bit, because of course I am part of a group that wants to have such a meeting, and ultimately a national organization. Or maybe we don’t need a national organization. The history of such groups is that they have often become just vehicles for power struggles. Myself, I think it is much more important to focus on local groups that are real and actually do something. This is the kind of question that I agree would be good to discuss at length.

But don’t worry, any conference or new group will take time to organize, and there will be plenty of time for people to talk about what they want to see happen.

I don’t know what MIA’s stance will be about the kind of ongoing discussion you describe. I think people like us should just submit articles with discussions of strategy. I plan to submit one soon.

And there have been several excellent recent articles, by Bonnie Burstow and Richard Lewis, talking about strategy. Neither Bonnie nor Richard are psych survivors, but I think they have a real commitment to the cause of fighting psychiatric abuse, and I would be happy myself to work with them. We survivors should certainly try to get our ideas about strategy and tactics into MIA.

There also is a section of MIA intended for ongoing discussions, but it doesn’t seem to get much attention. I don’t know how to make it get that attention, but maybe the MIA staff have some ideas.

Anyway, it is great to see that more and more people are not only unhappy with the merger of what was once our movement into the mental illness system, but want to actually figure out what can be done about it. We need this very badly.

The history of such groups is that they have often become just vehicles for power struggles

That’s one reason for my believing that it is unnecessary right now for a small self-appointed group to seize the time and start “announcing” events; I think we have the opportunity to start with a relatively large self-appointed group, one that would carry more weight as a collective than a “vanguard”group of 5 or 6 people; this in itself might help wotk against the tendency for work (and later influence) to be concentrated in the hands of a few people. Another thing that should be kept in mind is that liberation from psychiatry is not an individual “idea” but a collective need which we are trying to serve in the most effective way possible.

Richard L. and Bonnie B. are absolutely allies in my book, but there are others who no doubt think they should be considered allies but who actually work, generally “unconsciously,” to undermine us. We have the right to decide which is which and who is who.

I guess you’re referring to the forums section, which is rarely used, but if people knew to go there for this discussion maybe it could be utilized. And like you said, supportive authors could write columns on the general subject which would serve to generate further discussion along these lines. All this happens here anyway, I’m just wondering if we can give the process a bit more conscious and immediate attention and direction.

I’ve been listening to the comments via Email and wanted to add my tuppence worth, as a psychiatric survivor, on 3 occasions, and whose family through 3 generations has been targeted by psychiatry (family history of).

In Scotland I am working with “professionals” to bring about a change to the psychiatric system and to mental health services. We are allies in the cause and all of us have been in the system, on one side or another, in terms of receiving or providing treatment. I am finding that many people who work in the psychiatric system want a change and a shift. And I do believe it is the psychiatric survivors and people still in “services” who will lead the way on this. Be the vanguard for change.

For we’ve been at the sharp edge and been subject to coercion, labelled with disorders and deemed to be non-compliant, without capacity and lacking insight. Which was nonsense in my case because it was keen insight and non-conformity that enabled me to ignore the psych labels and taper the psych drugs after psych treatment in 1978, 1984 and 2002. Some of my family chose/choose to stay on the drugs and remain in the system, and that’s their choice. I can’t force my beliefs or non-belief on to them although I do recommend they take minimum amounts of psych drugs, as little as possible. Sometimes it’s difficult to get off them completely if you’ve been on them for a long while.

Therefore some of my family felt the protection of psychiatry while others of us escaped. More of us got out than stayed in. Some of us are still making our way out but have been disabled by the treatment for the psych drugs and force used can traumatise more than any mental distress or “mental illness”, in our experience. I am of the belief that psychiatry causes “mental illness” and uses mental disorder labels to manage mental/emotional pain.

I want to see better, safer, more therapeutic ways of working with people who are in emotional or mental pain, who hear voices or experience altered mind states. I didn’t like being forced to take psych drugs when in a “psychosis”. There was no need for the force. It made sense for me not to swallow the drugs which depressed me, gave me suicidal impulse and demotivated me. Made me feel zombie like. There has to be a better way and that’s what I’m working for in Scotland.

As a postscript to my comment, I’ve just been reading a synopsis of the book by Ken Steele which talks about his being “recovered on the risperidone” and “I have a vision that goes like this: In a new century, mentally ill people will have the science, the organized voting strength, and the means to leave our ghettos of isolation behind us.”:http://schizophrenia.com/New/Jan2003/voicesbook.htm

I don’t believe in mental illness and I think that people are isolated because of issues with psych treatment and with society, therefore I’m not encouraged to read the book. Also I don’t believe that science will hold the key to getting rid of mental illness. Unless we are talking of social science. I don’t approve of ECT or NMD, shocking or fiddling in brains. That sort of treatment definitely disables and causes new pain for old.

I do think, for solidarity’s sake, such an organization might serve a good purpose. I regularly use Google news search on the topic of anti-psychiatry. Until a recent spate of posts on MIA, about the only thing like to come up were articles, from psychiatrists and others, on anti-psychiatry were ostensibly negative. The view put over by the corporate media is that anti-psychiatry has been totally discredited. In effect, the idea was that it is history. Although I don’t want to be too doctrinaire nor ideological in perspective, I hope we can begin to change this point of view.

I agree with Ted about the importance of organizing on a local level, but here in the southern USA, where I reside, doing so has a tendency to prove much more problematic than it has in the more populous northeast, with its tradition of Yankee individualism, and in the more free thinking west. I feel we need regional activist organizations, in some areas, to bring the struggle that has been raging elsewhere for ages home, but that is quite apart from any organization with a specifically anti-psychiatry slant. The need for action being too great here, and identifying explicitly with anti-psychiatry, in such an instance, is likely to prove too divisive or alienating a matter to be very encouraging.

Personally, I like the idea, and I would like to see it realized. The idea for anti-psychiatry activism to attain a more vital web presence, too, I think a good one. With a web page, forums, that kind of thing, maybe they wouldn’t be so apt to confuse us with history. Anyway, I certainly think the discussion could prove a fruitful one, and maybe, in the long run, we will be able to advance strategically by eventually taking such a leap. Like you say, MIA tends to be reformist, in the main, and perhaps the abolitionist sentiment needs it’s own station on the internet, and beyond, with those little pockets of resistance out there in the wider world.

OK I’m winging this so bear with me…but the thing you mention about regional differences leads me to conjecture that that the local/national relationship could be symbiotic.

For example, there are many who can’t stomach any longer the idea that a perfectly rational and, on so many levels, correct anti-psychiatry position should be euphemized, hemmed & hawed about or watered down for the sole purpose of not “offending” some person or group with a “flat earth” mentality. A local group might be anti-psychiatry on an individual level, but if its main project involves circumstances which require a coalition with “mental health” people around this or that specific issue, it would be strategically counterproductive to focus on basic differences and contradictions. However a strong national organization/network could at the same time focus on the larger analysis and generate support for various local projects within the context of that analysis. It could also facilitate national campaigns such as fighting the Murphy bill.

It may be that we will require our own web portals at some point but I would hope this would be in addition to, not instead of, MIA. One thing that motivated my return to this sphere of endeavor was when I started putting in antipsych search terms and kept coming up with accounts of how the nasty, unwashed, radical, unrealistic, extremist “mental patients liberation movement” evolved (i.e. degenerated) into the polite and pragmatic “consumers'” movement. Gag me with a spoon!

Look, oldhead, I’m dealing with people who are so hypnotized and immersed in the “mental illness” theology that they’re on their way to an early funeral service, their own. I don’t have a game-plan for dealing with this kind of thing. I wish I could snap my fingers, and they’d wake up, but that’s not going to happen. Singing to the choir has its own limitations.

Yes, a strong national organization/network would be a way to get around those other limitations put on some of us by yocality. I’m all for it.

Certainly, when it comes to web portals, or any kind of online presence, I meant in addition to MIA, not instead of it. Singing to the choir, as I mentioned earlier, has its own limitations, but teaching, and with it, learning, is another thing altogether.

Given drug queues, nodding off, spittle chains, and the shakes, I see the parallels with zombies instead. Can’t say that though, can I? If you notice what’s going on you’re “stigmatizing” somebody, and that’s an absolute no no.

I must confess Ted, that not all of us are as resilient and strong as you. I admire you greatly for the obstacles you overcame and what you stand for, but I, for one, would welcome a ‘pat on the head’ (i.e. validation and encouragement) from a psychiatrist, while we support our daughter’s journey back to her authentic self.

Time and time again, she endures rebound effects while trying to go back to her personal baseline (before she received harmful psychiatric treatment). Though this phenomenon is not understood, studied, or documented, if we had an ally we could count on, a medical doctor who would go out on a limb for our family and offer brief and temporary care and validation during a crisis, as opposed to the standard approach that doctors take by blaming the patient or the family during a crisis and punitively adding another harmful medication to the cocktail or reinforcing the despair by re hospitalization or re commitment,I think we would have been home free by now.

Instead, the suffering is prolonged. The rebound effects are only a part of it. My daughter wants her psychiatrist to rescind her label and diagnosis. I don’t blame her. The psychiatrist who labeled her cast a spell on her; indeed, on our entire family. Seeing the spell for what it is is only half the battle. Taking your power back is a long process that could be made shorter if there was a retraction, of sorts from the original source. Does that make sense?

Even though I believe that a huge amount of daughter’s negative behaviors are iatrogenic in nature, sometimes there is nothing else to turn to in a crisis other than the existing system. You cannot just knock on a neighbor’s door in the middle of a night for help when someone is experiencing a complete break from reality and jumping through windows, buck naked, or whatever. It feels like battered women’s syndrome; our entire family is caught in this cycle of abuse but there are no Soteria houses, no underground railroad, no safe sanctuary while trying to find the light at the end of the tunnel

If that sounds weak, it’s because I am weak. And I think I speak for my daughter too, that the spirit is willing but the flesh is weak. We’ve just been battered down by this system and have nowhere to turn.

It was not my intention to start a string of negative comments. I definitely think there is a place for personal narrative. I also think such personal narratives could be conceived in a way that would allow ‘talking back to psychiatry’. I could, in fact, envision stories of personal experiences serving a tactical purpose in the fight for human rights and against oppression. I do worry about system friendly editors editing out any voice that could pack a real political punch. I also realize some people feel like the mental health system has served them, saved them, was the answer to whatever it was that was ailing them. His or her, hero or heroine if you will. People are more than their “case histories”. Definitely, and they can say so. I’m not crazy about the “self-help” trip either (You’ve got so much “self-help” the addiction to worry about these days.), but psychiatry would, like slavery, wipe out a real person in favor of their superficial replacement. It steamrolls life, and reduces it to something less, something one dimensional. People are expected to fail, and so many of them actually live down to expectations. I also feel like any time a person tells their story, you are getting more than a number stenciled on a concrete slab, what passes for grave markers, not even memorials, on the property of asylums. How dehumanizing! And, to think, it’s all about shame! If we can make people oppressed by psychiatry into human beings again, with names, and faces, and tmeframes, that’s a good thing. I’m just afraid the human, as is so often the case, is going to be edited out, and that the poster mental patient, or an updated version of him or her, (the ‘I’m a person with a “mental illness” who has done well’, for instance), is what is going to get edited in. I know there are people going through all sorts of abuse in institutions right now, and I wonder, would you be getting any of it, or would you simply be suppressing it and, in the main, editing it out.

I read your suggestion of an international collection of ‘recovery’ narratives with excitement, more questions, than suspicion. I’d rethink the notion recovery as it is really being politically corrupted in ever more politically driven health systems cuts. However, with a focus on survivor struggles for their lifes, I consider your suggestion to go international as a wonderful means to raising awareness. Could imagine an international group – artistic steering commitee of survivors, civil rights advocates, and artists with keen sense for social in/justice and mechanisms of abuse and oppression – to collect thoughts on the core values of such an initiative. There is much reclaiming of ‘recovery’ as related to the many, sadly mostly bad things, which happened to people and how many survivors found ways sometimes with, often beyond individual therapy, by looking how abuse and oppression often were/are common drivers of them going mad in the first place and than experience abuse, betrayal and lies in the standard biomedicalized psychiatric system. So much of the extreme perceptions and altered qualities of experiencing a world disrupted, far from expressing underlying brain disease, are cries of many hidden truth of about the dark sides of humanity as well as souls cries for battles against bad or with good powers… meaningful with and beyond the individual’s experience. The more, I as an anthropologist and survivor learn from others extreme mental experiences, the more I see them related to the many affective and mental ambivalent and conflicting tensions of artists altered ways to experience and express the worlds in the worlds. Nash had hinted at the same source of inspiration being in his mathematical ‘seeings’ and his unusual belief systems. The notion of ‘loss of reality’ rather reflects the common Angst of the unpredictability and difference in people’s altered perceptions, energies, beliefs and the cultural and spiritual blindness and ignorance of a biomedicalized betrayal and abuse system of silencing, threatening, coercing and drugging/zombieing people in distress or altered quality experiences.
To simplify, just for know, I would love to see such a narrative initiative open the souls to the many truth in unusual tongues of the souls and minds, with their qualities welcomed in a wide and moving artistic world, with the breathtaking and uncanny facets of mental and affective breaktroughs becoming valued as extreme ways of being and experiential, symbolic, inspiring, be it threatening ‘knowing’ in our huge world of human senses and hidden relations and spheres of meaning making. This is why for me ‘recovery’ narratives seems to narrow a vision, as I see more of menaces, uncannyness, wild tearing open of unusual senses and perceptions which also carry truth, and ways of finding some agency and self-validation through this struggles are often voiced as anything but a ‘common sense’ quietness of ‘recovery’.
I would welcome to explore and honor the many hidden and stigmatized facets in people’s struggles, disruptures from a trustable social/moral world and various extreme ways of altered quality perceptions and relations in menacing, dangerous or ghost worlds, or calls of blessings, as so very meaningful we do not even know yet. But I am sure true artists and independant artistic film makes will get my message. Honor the altered quality experience as essential insights into people’s lifes and struggles and discoveries, be they in seemingly troubling agency to the common sense at first, and there is new humanity to unfold… ne need to wait that people somehow recover in the eyes of the common sense people, cause everybody gets invited to read and imagine how the altered quality experience are meaningful responses to manyfold difficult, often abusive or threatening relations, often societally mediated neglect, racism, oppression, rejection… and how we can all learn what unfolds thereby discovering layers and possibilities for new awareness… as a path for reclaiming agency with the societally accepted validation of the narratives in their wildness, uncertainty, uncanny features… acceptance of whom may show much more meaningful and tensioned ways of ‘recovery’… having travelled challenging forces in one’s perceptions and beliefs… in my view… can lead to diverse regain of agency which shall artistically and spiritually surprise, not fulfill unjust expectations of survivors needing to become just common sense normal, which of course is impossible if their wide and wild and very transformative experiences be truly acknowledged as contribution to social and human cultures. This kind of possibility is what I would find truly exciting. Nevertheless my excitement comes with the warning that I would find a selection of the most ‘normalizing’ and ‘nicey’ exactly an expansion of the betrayal and silencing of the menacing and uncanny facets of altered human perceptions and experiences, as to be banned and shunned on and on. This is a political, what you mean by freedom is what you honor as part of tensioned humanity – as well as my survivor statement. I read ‘recovery’ stories. I honor the ones where none needs to become just like small and content re-models of ‘more normal people’ who never had the shattering real and mental and emotional experiences of the many survivors. The latter ones for me are part of a continuing rejection and oppression, even if labeled ‘recovery’, of survivors narratives ‘out of all depts’ and with their immense and non-valued truths of extreme states the soul and mind creates within and as response to being human in challenging and overwhelming relations and injust societies which seem to turn away from the uncanny sources of arts and expression and their potentials for diversity without forclosure and rejection of those whose souls and senses needed open so very wide for survival.

As I called for independant artists, both rich in tensions and imagination and sense of societal and cultural in/justice, Arundhati Roy’s voice accompanies me since I read ‘The God of Small Things’.

‘Our strategy should be not only to confront empire, but to lay siege to it. To deprive it of oxygen. To shame it. To mock it. With our art, our music, our literature, our stubbornness, our joy, our brilliance, our sheer relentlessness – and our ability to tell our own stories. Stories that are different from the ones we’re being brainwashed to believe.’

I agree. I don’t really see myself as “recovered” because I don’t see that there was anything wrong with me to begin with. I had an emotional breakdown in the face of adverse life circumstances and I still do face some of the same problems. I feel that the experience of “going mad” was one of the best things that has happened to me in terms of making me a more mature person and helping me to grow. What was the problem for me was the reaction to what happened from the people who weer supposed to be helping me.

Last year my county with a population of 900,000 actively sought recovery stories. Troubling is that not a single recovery story was collected where provider agencies, hospitals, advisory councils and advocacy organizations claim all treatment is predicated on the principles of recovery. The collaborative effort subsequently settled for what they could collect, i.e. stories of what recovery might look like. Tragically, at the same time our recovery speaker committed suicide.

Those who seek to collect recovery stories would be well served by considering the impact on those who fail to recover where our mental health system now claims foster recovery as its dominant paradigm and outcome. Perhaps, more can be learned from stories of individuals who fail to recover in a mental health system where the number of individuals on disability continues to grow apace.

Favorite quotations: “How can something that makes well people sick, make sick people well?” “You are entitled to your own opinion, but not your own truth.” Abram Hoffer – Canadian biochemist and orthomolecular psychiatrist (1917-2009) “I’d like to drive a dagger through the heart of psychiatry, but I can’t find a heart.” Michael Corry – Irish psychiatrist (1948 – 2010)

This Kafkaesque scenario started with a benzodiazepine taken for care-giver exhaustion and ‘bereavement-related’ insomnia. Benzodiazepine withdrawal syndrome followed on my part; diagnosing and prescribing frenzy, on the part of psychiatrists.

Those who once took an oath to do no harm, were ignorant of drug effects/side-effects/adverse effects, recognized them as proof of escalating mental illness, medicated them, and expressed satisfaction at having ‘unmasked’ the long-hidden mental illness. To this day they admit no harm. They deny everything. The damage is profound.

I don’t quite understand I must be mad . You want my story in something like a thousand words or less when I can write more words then that about just one single “electro-shock-treatment.”While knowing as I write, most likely you won’t believe it could have been as bad as that, from your safe place of the as yet “undiagnosed and untreated”, up till now.”Untreated from what?” So ” your” interpretation called a study, of my story can become an essential part of the “evidence base “for providing the weak tea of “reasonable hope” to people struggling with psychiatric difficulties. And even a chance at a prize to boot, Whipdeedoo !

What about my interpretation of my own story? Or better yet what about focusing on our own original discoveries, as we walked alone through the valley of the shadow of death that psychiatry is, that offer real hope and original strategies for surviving an experience exacerbated by forced psychiatry. What about our ideas for avoiding psychiatry altogether? What about our ideas for freeing those captured by psychiatry that want free of it? For the sake of others. What about providing this information for free internationally like Icarus for example with their “The Harm Reduction Guide For Coming Off Medication.” Is that the needed revolution?

I am interested to discuss the idea of an international collection of narratives by people who experience/have experienced extreme and altered ways to being in and making sense of the worlds in the worlds.

To me there is a huge chance to open hearts and minds to much more diverse humanity, including sufferings, traumata, neglect/no trustworthy relations, oppression. How disrupture from any shared intimate, trustworthy, reliable social worlds happens, shatters, transforms. How are the experiences of different senses and perceptions in one’s changed ghostly, uncanny, watchfully watched or strangely gorgeous worlds in the world of worlds.

There is fabulous chances to travel normally stigmatized, technically fragmented, labeled, alienated and psychiatrized human altered wide and broad experiences through narratives. I would welcome a more creative and constructive gathering of many ideas.

Narratives in their immernse and multi-layered, even exciting, exposure of the many senses in wider and altered qualities of experiences and perceptions, as truly mental, emotional and culture related, fully human experiences, do, by their collective presence, expose the ignorant, poor, fragmented barbarism of reductionist psychiatry, thus they are in themselves ‘antipsychiatry’.

To safe the multi-dimensional and truly artistic freedom of narratives on the extreme wanderings of psychè, strong emotions and mind – people know from moments of extreme fear, losing a close one or falling in love to carefully to build bridges to extreme experiences – I suggested an international committee with survivors, artists, writers, poets who experience altered perceptions worlds, and a minority of strong humanistic mental health professionals as Guiseppe Tibaldi who has co-created the Italian storytelling project.

Wouldn’t it be inspiring to collect ideas how we think such an international project can be empowering and part of struggle for recognition of people’s extreme experience?

Repeating the same anti-psychiatry criticism of a project because a psychiatrist co-created and co-develops it, a psychiatrist close to the tradition of Basaglia and the Italian democratic collective movement of liberation from institutionalized psychiatry, repeating the same redundant criticism of psychiatry without discussion of opportunities and challenges of an artistic narrative project with values and realities to still be discovered, to me seems somehow as judgemental and reductionist as the coercive betrayal and lived realities’ killing psychiatry many survivors oppose and many walked away from to co-create alternatives.

Narratives can be imaginative and captivating voices for alternatives in mutual learning and support, learning to not give in to the despair and isolation that often are part of extreme experiences and altered quality worlds. I will always remember I read the first narrative published by an old lady of the German survivor movement: I was no longer alone with extreme emtional and belief experiences, and as hers, mine made sense and were multiple.

I found more and from then on had narrative-allies to withstand the lies and betrayals of reductionist and ignorant psychiatry who had insisted my volcanic and wildly changing symbolic messenger experiences had nothing to do with my identity. I knew what had happened in my youth life and I knew how the symbols and main messages or missions were related to shatterings of my social identity. But I needed other people’s narratives from the altered qualities realities in the world to learn, listen, relate to the tales of truth.

Call me paranoid, but I am worried about the prospect of big Pharma using people who identify with having recovered because of a miraculous drug as ‘fronts’. They have enormous marketing resources. They could easily co-opt an international story telling project to tell fictionalized or exaggerated stories.

Will these recovery stories be able to be submitted without using real names? There’s a lot of prejudice out there and a person who has been without psychotic symptoms for over 10 years might not want business associates and even some friends to know a past history of a breakdown.

I would like to thank all of you for your comments here, including the abrasive ones, as well as for your mails.
This proposal has many roots: I tried to summarize most of them in the presentation of the Italian experience. One of the main roots is the impact of recovery stories on individuals involved in the mental health system: I don’t know how many of the readers of this blog have seen Eleanor Longden’s talk on Ted.com. If you’re going to check how many people viewed her talk, you can understand what I mean. I don’t care at all how many of them are mental health professionals.
Eleanor’s personal account lasts 15 minutes, but it opens the door to comprehensibility and hope.

As Ute writes, in her second comment, “Narratives in their immense and multi-layered, even exciting, exposure of the many senses in wider and altered qualities of experiences and perceptions, as truly mental, emotional and culture related, fully human experiences, do, by their collective presence, expose the ignorant, poor, fragmented barbarism of reductionist psychiatry…”

I’m sure that two of the most dangerous side-effects of biological psychiatry, at the larger cultural and societal level, are hopelessness and lack of any interest for the (interpersonal and ecological) meanings of the “psychotic” experiences. I agree that “recovery” is going to become “old wine in new bottles”: for this reason, in Italian, I prefer to avoid this word (“guarigione” – in Italian – is nearer to healing), but hope and comprehensibility are not old wine, or weak tea. I consider them as a powerful tool to put the emperor under siege.

This tool can be shared by all: survivors, family members – like madmom -, mental health professionals (surviving the reductionist wave), general public. Is it not enough? I agree: every stakeholder in this field has different priorities, objectives and time-frames, but some of them must be shared, in my opinion.

In the southern regions of Italy, at the evening, all citizens meet in a central square, where they can share positive experiences and critical remarks. I believe that MIA is something similar to such an open square. I thank Robert, and Kermit, for inviting me to come here (it’s evening time, in Italy).